Many Patients ONE VOICE New Zealand Patient Symposium 4 April 2017 Steve Crew Diabetes New Zealand

Ensuring the sustainability of the patient voice

Observations 27,011 charities $40 billion asset base $15 billion in annual income 114,000 not-for-profits $6 billion into the economy 70% of kiwis give to charities

Trends The world we work in is changing - FAST! Technology is changing the way people engage Finance sources are changing The capability expectations at governance & management level are rising The transparency & accountability expectations are higher than ever How we work is constantly changing Partnering with others is expected New business models are becoming the norm

Trends Clarity on organisational purpose and strategy is more important than ever CEO, the board & our staff need to be appropriately skilled to work in a disruptive environment Fundraising Shifting power bases Collaboration and consolidation will be increasingly likely for sustainability Managing stakeholder perception is vital – we must be seen to be having the impact we said we would Poor operators will struggle but… Good operators will wield a lot of influence

The patient voice declines 2008 35% decline in membership 20% decline in membership Last 12 months 7% decline in membership 2/3 of our members are over 65 years What is our tipping point?

Why the decrease? Aging membership Changes in membership requirements Traditional role of diabetes societies Members are more financially constrained Time poor Greater family commitments Membership structure did not suit them Pathway unclear

Is this your patient voice?

Or is this your patient voice?

Barriers to the patients voice

Barriers to the patients voice Health Professionals Giving information in a cold, tactless manner Using medical terms unfamiliar to patients. Pressing the patient to make a serious medical decision without adequate knowledge or time to think about it Belittling patients who ask questions that are important to them

Barriers to the patient voice Withholding information Forgetting that health professionals deserves respect—not your worship Pretending you understand when you really don’t Being afraid to ask a “dumb” question. (If you are thinking about it, it’s not a dumb question.)

Patient organisations help people by? providing information about living with their conditions, raise awareness about screening and prevention, and offer a number of support tools, they provide a forum for people to meet each other, share experiences and provide on-going support for patients, their relatives and friends additionally, as patient organisations represent patient views on issues surrounding healthcare, they help shape the current and future healthcare environment by making their collective voices heard

Patient organisations fight back!?

What are our organisations doing for our patients relating to medicines?

Medicines recommended for funding but stuck on the waiting list for up to 10.75 years 10 high priority recommendations are waiting up to 6.75 years The list grows; end of 2016 94 medications Number of various types of medicines on the list as an example: Depression 2 Hepatitis C 3 Schizophrenia 3 Arthritis 3 Cancer 12 Diabetes 6

Where is the patient voice?

Playing together debate Funding Patch protection Ideological views Working in silos So many charities and NGOs The list goes on……

Conclusion Until we work more collaboratively and partnership we will be touching only the edges of possibilities The patient voice is often designed and premeditated to suit our organisations purposes Should we be a tech organisation rather than a health organisation I would encourage all here today to be brave, challenge the paradigm and really ask if we are sincere about the patient voice